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M. Zoch

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Dataset Open access Sep 2026

Strengthening Rare Disease Data Readiness: a semantic approach to cross-registry interoperability

Rare diseases affect an estimated 446 million people worldwide, yet reliable epidemiological data are scarce due to insufficient data sources and lack of standardization. The German National Registry for Rare Diseases (NARSE) aims to establish a comprehensive epidemiological data basis and enable data availability for...

Clemens M. Hentrich, J. Vasseur, Ines Reinecke et al. · 0 citations
Open access Aug 2026

Decentralized rare disease studies in Germany: first results and hurdles of secondary use of patient data

The research challenges associated with rare diseases is characterized by a scarcity of information as well as reliable data due to their low prevalence. The problem of the “underpowered studies” is stemmed from a small research community, limited study participants and scarce data. The German project “Collaboration on...

M. Zoch, Christian Gierschner, Jens Weidner et al. · 0 citations

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